In my role as Chair of the All Party Parliamentary Group on Autism (APPGA), I have been proud to campaign for better services and support for autistic people across the country. Ten years ago, I campaigned alongside autistic people, their families and autism charities when I introduced the Autism Bill which became an Act in 2009. To this day, it remains the only disability-specific legislation in England and set the foundation for improving support and services for autistic people.
In September, the APPGA published the findings of our inquiry into the state of autism support and services, ten years on from the introduction of the Act. We found that there have been some significant improvements – for instance, there is now a route to diagnosis in almost every part of the country – but also that there is still much more to do.
One of the findings I was particularly concerned about was the lack of autism understanding among health and social care professionals. Our survey, facilitated by the National Autistic Society who are the secretariat to the APPGA, of over 11,000 autistic people and their families in England found that:
- 11% of autistic adults believe that hospital doctors understand autism and 13% think this for nurses
- 22% of autistic adults believe that GPs understand autism, but only 7% think this for reception staff
- 10% of autistic adults feel social workers they‘ve come into contact with have a good understanding of autism, and only 19% believed this for support workers.
The Autism Act’s binding statutory guidance states that all health and care professionals should have autism training. Yet, in a recent survey of councils, only 21% reported making autism training fully available to health and care staff in 2018.
Without a proper understanding of autism and the challenges autistic people face, it can be difficult to provide the care and support they need – whether in hospital, a GP surgery or in someone’s home. For instance, some autistic people really struggle with unexpected changes, feel or express pain differently or are over- or under-sensitive to things like light, sound or touch, which can make already stressful situations overwhelming.
Reasonable adjustments are vital, like giving someone longer appointments with more time to understand and answer questions, being treated in a quiet space or being given more information and time to prepare for procedures. But our inquiry suggests that far too many health and care professionals aren’t aware of the support autistic people might need, which is putting autistic people’s physical and mental health at risk.
Autistic people and families told us about negative experiences they’d had and the sometimes detrimental impact this had on their lives. I remember one story in particular, of an autistic adult who was in hospital for a pre-planned operation. There was an agreed plan but explanations about their needs weren’t followed by professionals. Despite the patient’s sensory difficulties, they were placed on a busy ward, with constant noise and light. This was unbearable and caused a lot of anxiety for the patient – the opposite of what was needed for a quick recovery.
What needs to change
Last year, the Government recognised that more needs to be done in this area. I was encouraged that they put forward proposals on how to roll out this training across England. These proposals could improve the health of hundreds of thousands of autistic people.
The Government is due to publish its final plans for making mandatory autism training a reality very soon. If this is to succeed, local areas must get behind it – and be held to account. This means making sure there are mechanisms to put in place training and proper monitoring that training is being implemented. The APPGA, ably supported by the National Autistic Society, will continue to support the campaign for all health and care professionals to gain the understanding needed to support autistic people effectively.
Find out more about autism and the APPGA report by visiting autism.org.uk